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How do you describe your heart condition to people? #CongenitalHeartDefectDisease

Sometimes when you tell people who have no idea about your heart condition you get creative about ways to easily explain complex heart problems. I was born with Transposition Of the Great Arteries with a Mustard Correction still in place. So basically I tell people my heart works backwards or pumps my blood opposite then normal. It’s the easiest way to explain it to people a they kinda get what my heart condition is. So how do you explain you heart condition to people?
#Disability #HeartConditions #TranspositionOfTheGreatArteries #RareHeartDefect #HeartDefects #MyCondition

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Yearly cardiologist check up went great! #CongenitalHeartDefectDisease

I’m happy to announce that my yearly cardiologist check up went well this year! My heart is functioning well and no need for pacemaker yet or even to clear any scar tissue around my stent. I still have complete a baseline stress test in June but other than that I’m done for this year. It’s wonderful news since my open heart surgery August 2019.

Now to focus on other aspects of my health and doctors appointments. I just did a head CT with contrast yesterday for my neurologist and I have my specialist Obgyn in June. I also have some other referrals to do as well. I’ve spent so long having my heart take first place over all other things that my overall health got pretty crappy. Not it’s time to find out answers and hopefully fix somethings.

Shirt from withhopeandgracellc

PIc ID - black and white photo of Amelia smiling with a shirt that says “beautifully mended by withhopeandgracellc

#CheerMeOn #adultchdwarriors #Disability #HeartConditions #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries #TetralogyOfFallot

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Heart Month Photo Challenge #adultchdwarriors

I thought it would be fun to do a Heart Month Photo Challenge for awareness of Heart Month. I’ll also be posting a shorter version of this for #CHDAwarenessWeek for the 7th through the 14th for anyone who doesn’t want to do a full month photo challenge but still wants to participate. Looking forward to seeing everyone’s photos. #CongenitalHeartDefectDisease #TetralogyOfFallot #TranspositionOfTheGreatArteries #ChronicIllness #RareDisease #InvisibleDisability #Disability #CheckInWithMe #DistractMe

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How did you feel about your transition of care from a pediatric cardiologist to an adult cardiologist? #CongenitalHeartDefectDisease

Did you have to transition to an adult specialist cardiologist once you turned 18? Or were you able to stay with a pediatric specialist cardiologist? I had the worst time of it. My parents had to constantly fight with insurances to get me with doctors that understood my condition. Then when I turned 26 and had to go on my own insurance and the insurance I was with and doctor I was put with was extremely negligent with me for four years. By the time I finally was able to get on a different insurance and doctor I was in bad shape and almost died. I’m lucky now to be with an adult specialist cardiologist.
Anyone had issues with their care or gaps in their care? Most adults with congenital heart defects don’t get the care they need.

#adultchdwarriors #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #HypoplasticRightHeartSyndrome #PosturalOrthostaticTachycardiaSyndrome #Disability #RareDisease #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries

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After surgery open heart surgery has anyone had problems with your back, shoulders, collarbone or sternum?

This is more of a personal question as I have been having a lot of problems with my collarbone, back and sternum since my open heart surgery. I’ve heard things about scoliosis in open heart surgery patients and I’ve also heard some people complain of a longer time healing woith sternal wires as someone who has had multiple open heart surgeries.

I’m just wondering what is other peoples experiences?

My shoulders are noticeably lopsided and I’ve had back problems before this 3rd OHS but now it’s unbearable. Especially combined with collarbone and sternum pain. #CongenitalHeartDefectDisease #OpenHeartSurgery #Disability #RareDisease #TranspositionOfTheGreatArteries #HeartConditions #LivingWithPOTS

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Types of Congenital Heart Defects

This list is super limited and I’m hoping to share more information. But I found this and I thought I would share it today. Here is some information for several CHD’s
#CongenitalHeartDefectDisease #VentricularSeptalDefects #Disability #TetralogyOfFallot #TranspositionOfTheGreatArteries

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Slowly recovering #adultchdwarriors

I’m almost 11 months post op from my third open heart surgery. Although, this past open heart surgery barely had any complications compared to my last one 15 years ago. This one is taking me a lot longer to recover from. This is the first time I’ve had sternal wires and for some reason my sternum and my collarbone is taking a long time to heal. However, I’ve come a long way. Each month I’m in less pain and getting more of a range of motion plus I’m gaining energy. I’m hoping to start doing so more cardio and exercise.
#CongenitalHeartDefectDisease #Disability #ChronicIllness #TranspositionOfTheGreatArteries #OpenHeartSurgery #RareDisease